Hello,
Has anyone else got a strong family history of breast cancer but had negative genetic test results?
I was first diagnosed with TNBC in 2012 (age 33). My mum had had ER+ breast cancer in 2010 (age 55). My grandma had ER pos about 20 years before that (in her late 70s), and her sister (my great aunt) had it twice (in her 80s) - i believe one was ER+ and the other was HER+, but i'm not 100% sure of that. Their mum (my great grandma) also had breast cancer, and we believe her mum did too. In 2012 I was tested for BRCA1 and BRCA2, and both were negative. In 2021 (age 43) I had a local recurrence of TNBC and got tested for new high risk genes that had been identified since 2012 and was negative for all of those too. Today, my sister (age 42) was diagnosed with TNBC. It feels like it can't be a coincidence that so many of us have had it in the one family. When I got my most recent genetic test results back, the geneticist said we may have a combination of low risk genes which, wheb combined, mean high risk for us, but low risk genes are not tested for. I was hoping that I'd be the only one in my generation of the family to get it, and thought maybe mine being TNBC rather than ER+ may have meant I was an anomaly, not linked to previous cancers in the family. But it would seem not, based in my sister's diagnosis today.
I'm interested to know whether anyone else on here has also got a strong family history but no known genetic link.
Thanks
Hi there
Yes me
Im the 6th person( that we know of , there could be more ) to have been diagnosed with BC , all on my mums side . We have all been diagnosed before age 50 and as far as we know we were all ER+
Genetic testing came back negative for us too but I just cannot believe that , but as you say they only test for certain genes . I was first tested in 2016 and have been referred back to genetics now so maybe there will be further testing , I don’t know
I was told TNBC cases within a family were more likely to have a genetic link than hormone positive . They also said tbat because BC is “ common “ then sometimes it just happens !
Seems hard to believe though ! I’m worried for my children too
Wishing your sister all the best for any upcoming treatments
L xx
I'm similar. A lot of breast cancer in the family but my genetic results came back negative to all genetic markers.
Hi I had genetic testing because of family history of breast cancer at young age. I was negative for the genes that they currently test for. The geneticist said that it is not uncommon for BC to run through families but not linked to genetics. She said she would keep my blood samples and if new research finds links to new genes I would automatically be checked for it. I asked about my 19 year old daughter and what she should do. She will need to be screened from age 30 (which is more than I got even though I had family history and found at routine mammogram age 52).
My sister's were both eligible for mammogram at 40 instead of 50 because of me and my mum having it. When my sister went for tests on her lump, the mammogram was actually clear, and it was only found because they did an ultrasound too. She ended up going private for those because the Dr at the NHS breast clinic felt the lump and decided it felt like a cyst and said she's do a 3-4 month ultrasound referral! She said the enlarged lymph node would just be due to her having had a vaccination recently. I'm so glad my sister was in a position to get a second opinion. I will be asking my GP what all our kids may be eligible for, testing wise in the future. I have a boy, but both of my sisters have girls. Obviously men can get it too, but hopefully lower risk. All are young currently (ranging from age 5 to age 13)
Unfortunately because breast tissue is dense in younger women the mammogram can miss some lumps. I had dense breasts and was initially told I had calcification on one side and ductal on the other. After double mastectomy the calcifications were actually lobular. So I had ductal one side and lobular the other! I think you have to be proactive and arm your children with your full history so that they can approach their GP early.
Yes we definitely will do. I'm also hoping that over the next few years progress will be made on the potential cancer vaccines and immunotherapies which may mean they could maybe be protected better.
It is just so crazily common in younger people. I have known so many people affected when younger
I gather it’s quite common! And breast cancer occurs in 1 in 8 women anyway, so maybe some breast cancer in family by chance. Any worried family members can be referred by the GP to genetics for advice and screening advice given to those deemed “at higher risk” of cancer.
there’s so much on the near horizon for breast cancer. There is every reason to be hopeful x
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